Hello,

I am so surprised to hear that levsin is not alleviating some of the symptoms.

since you are still in early days post surgery, I think you should contact your surgeon ASAP to discuss this and potentially try some other medications such as lomotil and bentyl.

this should improve over time (TBD) but don’t do this alone. Get your care team involved.

I can’t tell from the post if the severe pain is all about the frequent wiping, or if there is cramping/spasms. What happens if you just don’t go to the toilet right away? Delaying trips to the toilet (gradually) is typically recommended to “stretch the pouch” and improve time between BMs.

Scott. Cramping is mainly discomfort the pain is from the constant wiping. I’m trying to hold as long as possible to hopefully stretch pouch & also help maturity. Thanks

Eric. I speak with my surgeon daily with my concerns but besides trying different medications & food his response is mainly pouch needs to stretch & mature. Thanks

Hi Ken,

I am not sure if anyone covered this - but installing a bidet is a home run.  Cool water helped me a lot in the beginning.  I went like 20x for the first 10 weeks.  The first few months are tough on one’s anus.  Serious butt-burn.  There are skin barrier creams you can use which help.  Also, the frequency will slow down in almost all cases.  The first 12 weeks is hard bud.  I found walking helped with my frequency in the beginning.  Your suffering sadly was kinda in line with mine (without knowing exactly what is going on).  Maybe you need more Imodium.  Keep optimism- someone’s it all we can do.

Thank you. I do use our bidet & it does help. I’m at 3 weeks ….. another 9 & I might be in an institution.

Hello Ken,

I am so sorry that you are suffering.

my first weeks were as miserable as yours and I suffered and suffered.

Another suggestion I have is to check your medicines that are unrelated to your pouch.

I was taking an extended release medication for urinary issues that unbeknownst to me was causing severe GI distress similar to yours for my first 6 months.

I only figured it out when I was so desperate that I stopped all meds for 48 hours and started to add them back 1 at a time until I figured out the offending medication.

please hang in there. It will get better, I just can’t tell you when.

Hi Ken - you anus tissue will also get less sensitive.  Over the next few weeks you should get better slowly- don’t measure it in days, but rather weeks. Keep trying some bowel slowing drugs.  Tincture of Opium helped me a ton.

Thanks …. Will do

Flo max???

Ken, you are applying a barrier cream after every BM, right?

No only when it gets really bad

At this stage I'd suggest applying a barrier cream (plain zinc oxide is fine) every single time. That ensures that the tissue is protected from the irritating poop, and can start to heal.

I have found that a small amount of psyllium powder (fine ground-about a teaspoon) with 8 oz of water before meals has helped my guts slow down finally after all these years.  It also seems to create a mild, less burning output.  I wish I had known it had that effect from the beginning of the j-pouch experience.  My doctor gave me tincture of opium back then when I was first healing.  It did not help with anything and it made me feel insane. I took it faithfully for 6 months and then went through horrible withdrawal to get off the damn stuff.  A bit of psyllium would have been gentle, could have actually addressed the problem, and it doesn't make me into a crazy drug addict.  Not sure why my doctor put me through that.  Guess he thought it would help. He was so wrong.  I have recently noticed that a small amount of the legal (in TX, where I live) hemp-based THC products slows my guts down significantly.  These are referred to as delta 8 and delta 9. I use them for sleep mostly.  Sometimes I use them during waking hours, but only if I don't have responsibilities and can be in an altered state.  I like to pair them with CBD if they don't have any in them already to decrease inflammation.  If you're going to try the hemp-derived products, I would research the local brands first before you purchase them because the chemical processes used to wrest the THC from hemp can be toxic, and they all very different and not well regulated. If you're in the US, you probably live in a state that is less oppressive than Texas, so maybe you have access to a greater variety of THC products that you could experiment with.  And I second the use of barrier cream.  The Calm-o-septine can have a nice cooling effect, but for some that is too intense.  I have also used a regular zinc cream: my favorite is Penaten cream because it comes in a nice tin and lasts forever.  I also notice that aloe gel can assist with healing damaged tissues, and can act as a mild barrier, but right now you probably need the zinc-based products.

Thanks for the great advice ….. will try

Hi Ken,

I had my take down in 2017. First six months I ate well cooked rice with lentils, potato as my main course. It slowed Down the movement.

As I work with young children, I make sure that I use Ilex paste before leaving the house for barrier . This helps in blocking any irritation if there is a leak.

Hope you will feel better soon.

Try Zincofax. It’s always available in the baby section of any drugstore and usually grocery stores too. It’s gentle enough for a baby’s bum so it will be gentle and work on a bigger bum. It’s been around forever and it works. No one wants a baby to suffer from diaper rash, which is kind of what j pouchers suffer from frequent BMs and wiping. I used zincofax and thought it was miracle stuff. Smells good too.

Thanks

Try using pepto-bismul, it helps check the loose, frequent stools.  Also, I use psyllium husks in cup of water once a day.  This adds thickness to bowels and I go less often.  It takes away the burn too.  I take 3 imodium pills every morning, and an iron supplement which also slows things down.  Hope this helps.  It was a long journey for me to get to a place of control (over 20 years).

Doesn't pepto-bismol become toxic pretty quickly with frequent use?

Hi Ken,

o man I remember those first few weeks vividly and I have felt your pain and I hope you find some relieve in the already great tips from previous posters.

Some stuff that help(s) me

psyllium fibers (2g) before meal (max 4 x day)

Imodium spread over the day (I maxed 6 a day)

walk, start small, like 500 steps 1 round a day and accept you sometimes need to change your pants. Took me 3 weeks to get to 5000 a day (3 rounds) but I got some pelvic muscles back and can do 10000 in 1 go 6 months later.

use bidet, already mentioned but you can get a hand one for traveling/visits

use barrier cream after each visit (no longer need it, but it was very helpful earlier)

do not wipe, but pat dry after bidet, use lotionfree wet toiletpaper if there something to remove

most important is to look at the direction it’s going and not at current status.

6 months in front of you and despite the harsh start I do not regret doing it.

Alsmost forgot, I used Questran in the beginning to get rid of gal salts which burn like hell. No longer using it but it helped in the beginning

peace out